Today I had my routine pouchscopy, and I learned another of the many shades that having a pouch has... I have (or suppose to have) "pre-pouch ilieitis". If you google it you'll find many documents about. My pouch is in great shape (no inflammation, no ulcers) - unlike two years ago when there were plenty of ulcers, and it should be a good news, BUT the endoscopy find ulcers (much covered by fibrin, which should mean they were healing) ABOVE the pouch (where the anastomosys is) for about 3 inches... The endoscopyst scared me categorically saying that, for him, this means that's Crohns... I'm not the type who is easily scared by a word, a diagnosis, after so many years when I learned there are so many differences in every person with IBD, I know that I have chronic pouchitis and (at the moment, my 4 y-o pouch likes ciprofloxacin and antibiotics therapy in general) I'm sure this "Crohns" (as the endoscopyst said) or "Pre-pouch ileitis" (as I suppose I should call it), means no differences at all, BUT I'm in any case a bit anxious about it. I didn't expect that if my pouch is well, I could have a piece of ileum diseased and in my mind I'm not sure what will represent in my future. It seems impossible that I have the entire intestine (at least, what remains of it!) healthy? Any comments? Did you know this condition? -
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This might also be backwash ileitis. If that's the case it wouldn't be Crohn's at all. Nevertheless, Crohn's is often mild or very well controlled with medications. For me it's best to be aware of the worst but not assume it.
Backwash ileitis means Pre-pouch ileitis, Scott F. It's just another name (less used in literature). I will change the title as it could be misunderstood.
Pre-pouch refers to the location, and backwash implies a (non-Crohn's) cause. is the endoscopist also your GI, or can you discuss these findings with your GI?
Yes but in the literature "backwash" term is mentioned for UC and "pre-pouch ileitis" for people who underwent IPAA; then there is at least one document which says that the etiology could be the same. I believe that's the same, in my case I tend (when I'm at work for example) to retain more than I should and probably I developed SIBO in the pre-pouch area.
Hi IKH, I feel the same here. After so many years of being a UC patient, my new GI is now certain that I have always had Chron's, but not UC.
In one of my scopes my doc said I had pre-pouch ileitis too. In 2013 - 2014 I had lots of ulcers in my pouch and there was a stricture in the neo-terminal area resulted from excessive inflammation. The ulcers went all the way up to 30 cm (1 foot) through the ileum. I was awake during the scopes (multiple scopes) and watched the procedures on the screen. What I saw on the screen was pretty scary. I remember I once said "Gosh, this time I am doomed". That was the time my former GI thought antibiotics no longer worked for me. He put me on Humira and it cleared up most of the problems in my pouch including the stricture. However, Humira stopped working in mid 2015 but my GI insisted on it and had me have the injections once a week instead of once every other week with no results.
I finally switched to another GI who is more experienced and renowned in IBD. He scoped me last September....surprisingly found no ulcers in my pouch...but large patches of inflammation (as far as I could remember what he said) in the ileum. He is 100% sure that I have always had Chron's, not UC. In order to prove his point, he had me get the pathology report of my removed colon from the hospital where I had the J-pouch surgery in 1999. He said the pathology report also confirmed that I had Chron's at that time, not UC. He put me on Remicade + Imuran. I have been feeling better since then.
Although I have more faith in this new GI, it was disappointing for me to learn that I have Chron's after all these years. Chron's has always been a more scary condition to me given the fact that it may cause affect any part of the GI tract in addition to many other complications not commonly seen in UC patients.
I know the treatment is almost the same at the end of the day, but risks and complications still scare me 
Erdi